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I think that one of the hardest parts of living with a child with PANDAS is the verbal abuse. I want her to know so badly that I am trying to do what's best for her, but to her I am her enemy. I am trying to take away what has become her existence (her OCD). I have been hit, yelled at, called names and been told that she hates me I bet one million times. And what is hard about this is that the other children see her doing this and it makes them think that they can use those cards. I have tried disciplining her for these things, but it does not work. The very next hour she will do them again. She almost always apologizes after she sees that it has hurt me, and of course, that makes me even more sad. She has been off of her wonder drug (Biaxin) for almost a month and she is exacerbating badly. We've been told that we can not do any more due to the danger of using it long term. I am praying through this break in time and hoping that we can have it back in the fall. Can anyone give me any suggestions on how to cope with this behavior?

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The only thing I can think of is to give ibuprofen to take the edge off (for my kids it works wonders). The other thing I would do if my abx supply got cut off is to use some heavy duty, broad-spectrum herbs. I rotate the following 3 with my kids (on top of their high-dose abx): Biocidin (very potent herbal blend), olive leaf extract, oil of oregano. I have pulled both of my boys out of exacerbation on these alone at times. If you want info on what dose/brand, PM me. Best of luck, sounds like your family is in crisis...not fun :-(

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Hey there,

 

The saying my mom always taught me was "if there is a WILL there is a WAY." So in my opinion if one Dr. told me there was nothing we could do I would see another one..or at least talk to another...maybe there is something different that may help even a little?

 

Have you tried IVIG, done the steroid bursts etc. I'm pretty new here so please forgive me since I don't know your history. I just hate to see anyone feel this way. There has got to be a way. Sometimes changing your path changes your destination too.

 

All you can do is tell her over and over again how you love her and let her know that no matter what you always will, good days and bad. I wish you didn't have to go through this and I really hope it gets better soon.

 

Kristy

Edited by Kristy S
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I think that one of the hardest parts of living with a child with PANDAS is the verbal abuse. I want her to know so badly that I am trying to do what's best for her, but to her I am her enemy. I am trying to take away what has become her existence (her OCD). I have been hit, yelled at, called names and been told that she hates me I bet one million times. And what is hard about this is that the other children see her doing this and it makes them think that they can use those cards. I have tried disciplining her for these things, but it does not work. The very next hour she will do them again. She almost always apologizes after she sees that it has hurt me, and of course, that makes me even more sad. She has been off of her wonder drug (Biaxin) for almost a month and she is exacerbating badly. We've been told that we can not do any more due to the danger of using it long term. I am praying through this break in time and hoping that we can have it back in the fall. Can anyone give me any suggestions on how to cope with this behavior?

The only thing I can add is to keep reminding yourself that this behavior is totally involuntary. She does not mean it, it's like she is posessed. So try to let it slide and love the child that is trapped inside.

When she is well you could try to work on finding alternative behaviors. How old is she? Does she understand what PANDAS is and have you done any work on the OCD front? Also, is there a trigger to the verbal abuse? Do you see it coming? Maybe you could try some kind of ERP (Exposure and Ritual Prevention) techniques to change things.

And I know is hard when you have other children watching. My ds does not verbally abuse me, but I do have to accomodate him sometimes, and it's hard not to give the impression that I am playing favorites. But my other kids know all about PANDAS and are quite understanding, I guess it depends a lot on the ages.

I'd like to recommend to you about called "What to do when your child has OCD". It was recommended to me by someone in this forum (sorry, I forget who!) and I found it very useful for me as a parent to deal with the OCD.

 

Hang in there!

 

Isabel

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Can you talk about it when she's calm? Tell her you know she doesn't like it when that happens to her, then brainstorm some things she can do when it happens and what you can do to help...practice when she's calm. Have some silent signal you can use when things start to get out of control.

 

Valerian root?

 

I'd also approach the doctor if you can and let him or her know how bad it gets off abx...see if they can monitor liver/kidney functions to make sure she's handling it okay. Our pediatrician is worried about causing problems w/abx, but was willing to be more aggressive as long as the dangers were monitored. He once said he feels like we are having to choose between her brain and her liver. Thankfully, her liver has always tested just fine, so we continue on the abx..

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So sorry you are going through this. I agree with the above- it is really hard- but do remind yourself that your sweet loving daughter is trapped in there, and suffering so much.

 

We had a lot of defiance, and anger from my dd during her pandas episode- it all went away with aggressive treatment.

 

From the sounds of things- you need to attack this medically (I know easier said than done). Have you done a month long steroid burst? Are you considering IVIG or PEX?

 

Also- in the meantime, try to keep the house as calm as possible. Sit the other kids down, and explain what is going on- that your dd is sick, and this behavior will not be accepted from them. If they are older than 5, I think they are capable of getting it. Try to treat them once a week (movies with Dad or grandma?) to show them you understand they are suffering- at the same time, try to set some time aside just for you pandas dd, alone. It is a relentless, exhausting, logistical nightmare. I have been there. Call in all of your favors, and hit the caffeine. But- you will be there for these kids- and we are there for you.

 

Also- have you tried smartyjones' technique of repeating from The Explosive Child book- it is extremely helpful.

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I'm sorry. I know how you feel. I had to tell my ds that we are flying to Chicago and he is getting ivig next week. He is not in exacerbation but it still sent him into a rage, crying, throwig (pillows thank god) knocked a chair over. He later apologized and talked about how scared he is of the needle and wanted to know if ther would be any side effects and asked to look at pictures of it on google images.

 

If he were in exacerbation that second part would not happen. I'm terrified of "turning back the pages" to a darker place than where we are now. And the rage and blame is the worst. Its like they blame us for their disease, and we just have to take it. It is VERY stressful. I've been getting heart palpatations alot lately, part is living on eggshells, part is worry over the ivig.

 

I have no suggestions beyond what I'm sure you are already doing, just wanted you to know you aren't alone, and to take care of yourself!

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Thanks to you all for your supportive words. I have not read The Explosive Child. I will look for it at the library. We have done a steroid burst (good results, but a really bad re-bound, wherein tics ramped up to 240 times an hour). After the burst they started to decline. Biaxin took them away completely. We have tried all the other antibiotics, but have not done IVIG. She has had CBT which did not work for her. I've tried to find a therapist that does ERP, but without any luck. She starts therapy (again) this week, and we are trying play therapy. I wonder if anyone has tried that? She is 10, but the therapist thinks it will benefit her. DD told me that she thinks she is going to feel stupid. If it makes her feel that way, we will certainly discontinue it and keep looking for someone who will do ERP.

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She has been off of her wonder drug (Biaxin) for almost a month and she is exacerbating badly. We've been told that we can not do any more due to the danger of using it long term.

 

I'm not really familiar with why Biaxin is so dangerous long term....but is there a possibility of at least getting on to something like Azithromycin or Augmentin XR which others have used safely long term?

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My son was mean as well whne he was sick and he was going through a rage. I don't really have a coping skill to offer but just walk away if you need to , just keeping saying I love you while she's wailing away. Resist every urge to get caught up in the moment and saying something worng like "What's wrong with you? Why do you have to be so mean, etc." For some, those words may come out as a reflex, but it must be avoided. When the storm calms, she may remember them and feel worse.Aftre the rage, remind her that yo love her and you aren't mad.

 

 

I think that one of the hardest parts of living with a child with PANDAS is the verbal abuse. I want her to know so badly that I am trying to do what's best for her, but to her I am her enemy. I am trying to take away what has become her existence (her OCD). I have been hit, yelled at, called names and been told that she hates me I bet one million times. And what is hard about this is that the other children see her doing this and it makes them think that they can use those cards. I have tried disciplining her for these things, but it does not work. The very next hour she will do them again. She almost always apologizes after she sees that it has hurt me, and of course, that makes me even more sad. She has been off of her wonder drug (Biaxin) for almost a month and she is exacerbating badly. We've been told that we can not do any more due to the danger of using it long term. I am praying through this break in time and hoping that we can have it back in the fall. Can anyone give me any suggestions on how to cope with this behavior?

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I am so sorry you are going through this, and I regret to say that we are going through something very similar.. My daughter did wonderfully on Biaxin, and we cannot use it long-term, due to its high potency.

 

The verbal/physical abuse is so hard to take. Not to be negative, but, sometimes it seems that no matter what advice you get, the crisis situations just turn the whole family's life upside down. My 3 year old daughter is usually witness to these events, and sometimes she is the victim of them. To say ignore it - I don't know - when it becomes physical or when the verbal abuse just gets to you, how is it ok to ignore?

 

I agree with everyone that our children are trapped inside this illness, and we have to make the separation. But, where do we draw the line?

 

We are currently debating the use of tenex as a possible interim solution. Dr. T has been our consult doc, and he's gone MIA on us, so I truly truly feel like we're back to square one.

 

I, too, have recently begun reading "The Explosive Child" hoping for some other methods of avoidance or redirection.

 

I wish I had more advice for you.. What I can say is that my heart really goes out to you, and know, in your frustration and your search for answers, that you are not alone.

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